Site to raise awareness for Charcot Marie Tooth. Discuss my quest to run the Boston Marathon while having CMT. Talk about training and doing marathons, half marathons, triathalons and duathalons. Discuss being an athlete with a disability.

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Tuesday, September 27, 2011

Welcome Megan Sebeck to Team CMT. Megan is serving in the Marine Corp and is from New Windsor New York. Like many on Team CMT she has a family member with CMT. Her dad has CMT and she has always admired how he has adapted and overcome his CMT. She wants to run in honor of her dad and others who suffer from this disease. She says she runs because she can.

She loves to run, is interested in fitness and has been active for sometime. This weekend Megan ran the Super Spartan Race. It was an 8 mile mud run that turned into a 11 mile run when she was told to go the wrong way. She had a great time and waited till after the race to don her Team CMT singlet. She didn't want to get it all muddy in the race.

Megan has the goal of running a marathon soon. There are a number of Team CMT members doing marathons this year so Megan will fit right in. Megan also likes to travel and was recently in England. Meagn, thanks for your service and welcome to Team CMT. I am so proud to have you on our team.

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Wednesday, September 21, 2011

Welcome to Kentucky Team CMT members Shirley, Cody and Rick Weatherford. They aren't athletes yet, but when they heard about Team CMT they wanted to wear tee shirts to support our effort. They don't have a support group in their area and do not know anyone outside of their family with CMT.

Shirely shared with me when a family member has this disease and know one has heard of it or knows what it is, it makes it that much harder for the family.

Cody is 18 and has been told he has CMT. They don't know which type since their insurance will not pay for genetic testing. Cody was diagnosed when he went to Shriners hospital after a year of unsuccessful treatment for scoliosis. Scoliosis is common in CMT patients. In middle school Cody had a growth spurt and starting showing signs of clumsniess and complained of pain. They thought it was just growing pains. Those signs all fit together now that he has been diagnosed. Some days are good other days he can be exhausted without doing much of anything. This makes school tough for him.
He got his first pair of braces this year and is now taking medication for his pain.

This story is very familar to all of who have CMT or have family members affected by the disease. One of the great things about Team CMT has been creating a community. Most of us with CMT have never met anyone outside of their family with this disease. We now have a community of 45 members all working to raise awareness. We can't do anything about this disease, but we can give it a face and a name. No one should have to suffer the indignity of having a disease that no one has heard of, especially when it affects 155,000 Americans. Thanks to the Weatherfords for their efforts and welcome to Team CMT!

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Sunday, September 18, 2011

"We will go to the moon and do other things, NOT because they are easy but because they are hard." John F. Kennedy.

On Monday I applied for the Boston Marathon. I got to apply Monday because my time from the Madison Marathon was more than an hour under the qualification time. The reason my time is so far under is I have applied for the "Mobility Impaired" division.

I set running Boston as a goal, not because running a marathon is easy, but because it is hard. Boston is one of the toughest races to get into and one of the toughest to run. I am running it because the medical community thinks those with CMT can't run. I am running to raise awareness about CMT and to educate the public about those of us with CMT. I want those with CMT to know that you can accomplish many things even with this disease. I am running to blaze a trail for my other team members with CMT. The B.A.A. was clueless about CMT. Next time a Team CMT athlete applies they will at least have heard of the disease.

I was excited by getting so close to my goal, I shared with a co-worker about my Boston application. He told me I was a scammer. I was just like one of those people who are healthy and park in the handicap parking spaces. He said I am taking the place of someone deserves to be there like an amputee. When I explained I have an inherited neuro-muscular disease, he informed me there is nothing wrong with me since I run marathons.

It bothered me, because I also wondered how I will feel lining up with other athletes that are amputees.
I don't want to take the spot of anyone that deserves to be there. The division is reserved for those athletes with conditions that prevent them making the time standard. I know that my CMT prevents me from making the standard no matter how hard I work. Boston is the place for the top runners to compete. The fact that I am an hour under the time standard even with CMT shows I deserve to be there. Even the runners on my team with CMT will be hard pressed to make the 6 hour time standard.

The other reason it bothered me was no one knows about CMT. If I had told my co-worker I had MS, he would have nodded his head in recognition and that would have been the end of the conversation. There are more people with CMT than MS in the United States. While I can't do anything about CMT, I can
at least make CMT a disease everyone has heard about.

The comment that there must be nothing wrong with me because I run marathons hurt the most. Many of us with CMT look ok and the challenges we face are not visible to the average person. Even someone like myself with a mild case face challenges every day. Some days I have profound fatigue that makes it tough to get through the day much less a work out when I get home. I am much much more vulnerable to injury. I can't run everyday. I don't have enough range of motion in my ankles to walk right much less run. It is estimated it takes a person with CMT twice the energy to do tasks like walk than the average person. So not only am I a slower runner due to CMT, it probably takes me twice the energy. Imagine being out there for 5 hours expending twice the energy of the average runner. Just training for and completing a marathon with CMT is a major feat. Plus this progressive disease may eventually steal my ability to run.

So yes I deserve to be at Boston and will line up proudly for Team CMT if the Boston Athletic Association accepts me. The athletic limitations I have faced have made me more determined as an athlete. First to found Team CMT, then to set the goal of running Boston. When I was diagnosed I realized what a gift it was that I could even run. I intend to use that gift as long as possible and to raise awareness and educate through my efforts.

I don't know if I will run in Boston next April. If I'm not accepted, it just means God has something else in mind for me. If that makes me a scammer I am willing to live with that.

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Thursday, September 15, 2011

" It doesn't matter how slow you go, as long as you do not stop." Lao-Tzu

Welcome Dawn to Team CMT. She was one of our first members and joined after seeing an article in the national CMTA newsletter.

Dawn Fritzell is from Appleton. She recently completed the Cheesehead Half Marathon in Hilbert Wisconsin. This 53 year old finished in a very nice time of 2 hr 4 minutes and some change. She is pictured here with her daughter Rachel 14, son Ken 10 and her husband John. All three have CMT. Dawn asked to join the team to support them.

She is also a member of the Fox Cities Pace Setters Running club. She will be running in the Fox Cities Half Marathon on Sunday September 18th. I ran the same event exactly one year old. I used the event as a fundraiser for the CMTA. It was my first race after my own diagnosis. I had not run a race in many years, but decided to return to competition because I relized what a gift it is to have CMT and still be able to run.

Those of us on the team, especially those of us with CMT realize our running is not about times and medals. We run because we still can and want to keep running as long as we can.
Many Team CMT members have family members affected by CMT, they run for them. It doesn't matter how fast we run or how many medals we win, although those are nice. What is important is that we don't stop.... and we won't. Not until we reach our vision of a world without CMT.

Good luck this weekend Dawn! We're proud to have you on Team CMT!

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Sunday, September 11, 2011

It has been a busy couple of weeks for many Team CMT members. Robert Kearney and Cheryl Monnat ran the Eisenbahn half marathon on August 27th. Robert and Cheryl have been training in the Badgerland Striders build-up program for Lakefront Marathon on October 9th. Cheryl won 2nd place in her age group. Way to go Cheryl. Robert and Cheryl both worked together at Johnson Controls. Robert now lives in Indiana, but comes to Milwaukee to train and race.

Texas team members have been busy as well. Morgan Johnson is currently in China competing at the World Triathlon Championships. Morgan is a member of Team USA. Team member Joyce Kelly ran in the 9/11 heros 5K in Dallas and continues to train for the White Rock Marathon in Dallas the first Sunday in December. I expect to see Joyce at Boston next year.

We had a large contingent of Team CMT runners at the Lake Country Half Marathon and 5 K. Kathy Stultzm her son Lincoln and niece Alyssa Flagge all participated. They are running for Kathy's daughter Regan. Kathy is also training for the Chicago Marathon in October. She has been battling an ankle injury. Good luck to Kathy and thanks to all of your family.

Appleton Team CMT member Dawn Fritzell ran the Cheesehead Half Marathon on Sept 3. Still waiting for the pictures. Dawn has several family members with CMT.

Our Team CMT member in England Donna Dewick is in Paris to race for our team. Can't wait to see the pictures.

I have been busy training for Marine Corp at the end of October. I have been fighting turf toe since the end of July. I have been rocking the kineso tape and it really seems to have helped. I was able to get all my runs in this week, including my 20 miler today. The biggest news is on Monday September 12th I will register for the Boston Marathon. I am asking for entry to the mobility impaired division. I will have to wait with the all the runners applying to see if I am accepted. This year for the first time runners with the fastest times will be accepted until the race is full. I should know by early October if I have made the cut.

We also gained 4 new Team CMT members this week. We now have 42 members and we are still growing. Thanks to everyone who trains and races for Team CMT to raise awareness of Charcot Marie Tooth Disorder. You all inspire me!

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Sunday, September 4, 2011

Team CMT member David McCarthy is a 20 year old college student from Wayland, Mass. He will be a junior at Vassar College where he is a biology major. He is Pre-Med so let's hope he makes it to medical school and helps to educate the medical community on CMT.

David is not connected to anyone on Team CMT. He stumbled across the Team CMT site when looking for races to run during his summer break. After reading the site he knew he wanted to learn more about CMT and help Team CMT raise awareness. He was happy to support our cause and I am thrilled to have him on the team.

David recently ran the Thomas Chamberas 6K cross country race. He completed the course in 22:33. Congratulations David and welcome to the team. You are one of 38 members of this team in 12 states and in England. Welcome to Team CMT David. I am looking forward to seeing you run a lot more in Team CMT colors!

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.